May 19th, 2015
|11:21 pm - and, on a more spiritual note...|
I'm choosing to consider today's rain to be, like it was at my wedding, Lugh's blessing.
Taranis even came by this eve. I couldn't get outside for obvious reasons, but I could still hear and feel him!
So, then I did a reading for myself, with maybe my favorite new deck, the Animal Wisdom Tarot. It gave me a fair one, nothing too horrible in sight apparently; seems to be an emotional rollercoaster, but by the end I'll get something I want badly. Interesting.
I pray to the gods for the wisdom to accept this as best I can, and to learn from it.
If I think back on the past few months, I know I've learned more about strength than ever before. I've certainly acquired more patience and courage, even though facing the blackout of surgery is still frightening. But, by now, I know firsthand that yeah, you can indeed be terrified of something and still go through it; and it really does depend on how you let that fear affect you as to how you'll do. I didn't know that when I was a kid, all I knew was I was sick and often badly so, and that I was growing up in an abusive environment. Well the environment's definitely better by now, I'm at least maintaining till surgery and my body started doing its "heal like Wolverine" thing so now the wound is actually TINY compared to what it was. But, this is the time to push, to work further at strengthening my body and my mind, and balancing them, so that I'll be more like The Great And Powerful by next month, and less like someone cowering in a corner freaked out constantly that she'll die on the operating table or any time soon after. I know the fecal matter in the JP tube was the first sign of things going south months ago, I know that fistulae can happen to anybody, but I'm hoping and praying that this time I'll be back to being strong enough for that not to happen. No, I know that physical strength isn't the only kind out there - oh hell's bells do I really know that by now - but I need that too.
Current Mood: contemplative
May 13th, 2015
|10:53 pm - Rest? Isn't that what You Do When Sick?|
Spent most of today getting poked, prodded, and needled - oh blood draws are FUN when you're dehydrated from having a sinus infection, plus fistula, and am prone to it anyway - not to mention lugged about like a sack of potatoes, to Lahey Clinic and back, where I got to hear no, the hemotologist isn't stopping anticoagulant shots till a bit before surgery and then he wants to start them back up again right after!
Even better: foley's been leaking, showing some blood, so my urologist wants to see me tomorrow - nice and early in the morning. When round two of the same as today commences. The only difference will be that he's here in town, not an hour and a half away.
Though, I have to say, the most aggravating part of all of this has been that today was bag change day, which I'd been waiting for with baited breath because the last one leaked. This one DIDN'T - until today's athletic events occurred.
I fricking hate this bag.
Current Mood: aggravated
May 6th, 2015
May 5th, 2015
|12:28 am - Feel that Power...|
Tonight's Full Moon rite was very different. I don't know if that was just because I combined it with the http://druidnetwork.org/what-is-druidry/beliefs-and-definitions/peace/dnifmpir/ or because of some other reason. Opened with their calls, and then drew down the moon as usual - but it didn't GO "as usual." I got visions of a shield maiden thrusting her sword to the sky and lightning crackling downward. I heard Boadicea's name over and over. So then I went on to the next part of the network's ritual, a part that honors fallen warriors (of all types). And again, I got some pretty powerful visions: Theoden from the "Return of the King" movie, giving a speech before his last ride; three ancestors of mine: my grandfather who was a fighter pilot in WWII (he said, "fight on, Jessie", I give you courage"), my grandfather who was an engineer during that same war (I don't understand most of what he said but I heard his gravelly voice say, "I give you strength"), and an ancestor who decided to remain nameless but who was female, and one of the first to survive in this country after crossing from England in 1642, (and she told me, "I give you perseverance!"). All the while that image of the shield maid kept appearing, and I heard a little bit of that song about the Eye of the Tiger. They all told me, "You will survive, because YOU CAN." And there was something too about paying attention to the number 11, but it was very vague.
Some rite, huh? By the time I released the Moon's energy with thanks, I felt exhausted!
Current Mood: contemplative
May 2nd, 2015
|08:14 pm - Downward Dog Does NOT Mean "Down Splat On the Floor" - right?|
Well, May has certainly come roaring in. As predicted, it was a VERY stormy Beltane (I mean in the other sense, though rain was going on outdoors the whole time). I even had to have the foley catheter changed early because it was leaking badly. And, the bag is back to its usual leakage tricks. Slightly better since we've learned that apple butter helps thicken things, but not good.
Because of all the stuff that happened yesterday I didn't have the energy for ritual, so I did a little holiday rite this morning. THAT felt good. Eh, ritual divination was as expected more or less, even.
So, then, this evening, I got up to do a couple laps around the living room, do some squats and tiptoes and whatnot. And then I got it into my head after doing Warrior I, II, and III (ok I hang onto the walker for III), "hey, I've been doing Warrior sequence for a little while now, let's see if I can do a Sun Salute!"
I can bend backward a little.
I can touch my knees.
I can touch my toes.
... no Downward Dog:(
That was actually scary; I bent forward a little and kind of felt nothing there. My hands were there, but there's a microsecond before you touch them to the floor to do anything like walking them forward into that pose, and my fricking core just WASN'T. I don't even remember a time when that was the case.
And so, down I went:( Onto arthritic knees. Ohhh, OW. They didn't give me too much issue with arthritis before this year, but this past month it started, and wow, landing on that hurts. Even worse was trying to get up. Attempting that pose without any core worth speaking of was bad, but trying to get up from having fallen, even with a lot of help, without any real core stregth, was a ton worse. Suddenly I'm weak as a fricking kitten.
Sooo... I'm having another first: actually having to LOOK UP EXERCISES FOR MY CORE (that won't kill me, or if it's even possible - meaning, SAFE - to do them). First of all yeah, I should be exercising it a little apparently: http://www.stomabags.com/exercises-with-an-ostomy. As for yoga specifically for that region: http://www.yogabasics.com/practice/pose-type/core-strengthening-poses/ (I'd add to that Bridge, and Fish, both of which I already do).
But dammit, Downward Dog, we will meet again!
April 28th, 2015
|05:22 pm - Under Pressure|
Yikes. We finally got a good bag change yesterday, no leakage. So I got up - I would have anyway but this was a bonus - and walked.
Still sleeping really badly, and that isn't liable to improve too much unfortunately:( But what it means is if PT or OT or even home health aide come in the AM next day (like today) they're kind of out of luck, because I'm sorry but I'm fricking TIRED. I NEED GODDAMN SLEEP.
So, no OT today. It did however mean that I got enough z's to feel alive by 1pm when my therapist appeared, and then was able to eat and have PT.
But then, that brought up a mess of internal stuff I have it seems been blocking (without knowing it, sigh).
1)I'm under pressure to keep up to and above a 2000 calorie per day diet, with a ton of protein and carbohydrates, preferably soft solids
2)I'm under pressure to keep excercising so that I gain as much strength as possible
3)I'm under pressure to get some work done every day - or at least every other day
4)The PT was asking me today if I'd discussed yet options with the OT about clothing "for those days when you feel like going outside" (lady, this is the first bag in TWO WEEKS that hasn't leaked everywhere, it's a very rare occurrance to get something like this, so I can't just fing go outside out of the blue - plus I've also got a frigging foley to worry about!)
5)on days when I CAN sit out at this computer, it feels like I'm being tugged every which way: someone wants to play LOTRO, someone wants to play GW2, someone would rather not be sitting out here at all, I feel guilty if I haven't done work yet that day (like today), I feel guilty if I don't go play Starbound or something with my husband... I worry about the bag starting to leak if I'm out here too long, but the PT and OT of course think it's a great thing when I sit up out here at the computer as opposed to in the other room where I'd normally be FOR WORK OR SOMETIMES JUST TO TAKE A BREAK.
6)I don't even feel like I can exercise properly; the PT's started incorporating some of my yoga into my sessions, which is great, but to her it's more like "how many sets do you do" as opposed to breathing, getting focused and into a pose, and staying there for a bit. So even if she's not actively saying that, I don't feel like I can do it without being criticized:(
7)There's all of this, and then all that fear of death or what zillion things could go wrong with the upcoming operation, plus just being uncomfortable (because honestly, it's not comfy at all to sleep sitting up or with one of these bag things on you, and worse if they're leaking which they usually are).
8)So yeah, I'm not sleeping my schedule, your schedule, or anybody's schedule.
I don't know what to do to calm down - to fully calm, I mean. I don't know if there is a way. Hell, this bag's doing pretty well; who knows what tomorrow's bag change will be like? It could be even better, and it could also be much, much worse.
Meantime, there's just - too damn much pressure!
Current Mood: stressed
April 20th, 2015
|11:27 pm - Enter the Dragon|
Yup, it's Monday.
We had this problem last Friday wherein we ran out of bags to change into, and today were told the company who makes them didn't have any. Well, as you'd expect both my husband and I had a bit of a freakout about that, as did the VNA nurse and home health aide. I was only slightly better about it because I've had to live through times when I couldn't get a bag change when it should have happened, like when I was at the terrible nursing home and they didn't have any bags either. But the fact is, my skin was starting to break down just like it did those couple times, and people were worried.
Well, I was thinking about it, and we have a lot of small bags for colostomies because it's what they sent us. And I thought of something like a Chinese paper dragon thing, where a few of those bags could be attached together so the wound/etc could be covered, and my husband thought of something like that too at almost the same time. We figured, this can't get worse, right? I mean I've seen worse but we don't do the "not-taking-care-of-skin" thing here.
That was around noon - so far so good! Call me happy just now:). I was just hoping to get a day out of it - now I'm ready to try and get the thing to last through the night. We'll see...
Lol, he says the worst thing about the Dragon jury-rig is emptying it; stuff ends up in one bag or the other and it isn't always ones you'd think it would go to! But, we both agree this is the most entertaining bag change ever.
Current Mood: amused
April 14th, 2015
|06:36 pm - ...and WHILE Nobody's Watching...|
Yeah. Deal with it. Occasionally my husband does have to leave the house for at most 2 hours to get meds or supplies. I just stay put.
Today, "stay put" feels more like a chore than it ever has on these occasions though. I started noticing a couple days ago that I'm beginning to feel more irritable, more bitchy and restless, more like "I am really sick of this fricking bag and want it OFF," than the "ow, this HURTS --> hurts," "ow, this is uncomfortable," "ow, it isn't too comfy getting up," "oh crap it's messy," stuff that had been filling my brain before this, all these months. Staying put for safety's sake, but I did some yoga. And here I'd even gotten out of bed already today to do some balancing excercises with the OT. Whaddya know?
So the pattern we've more or less gotten into is: wake up/meds/food, watch TV till VNA and/or OTor PT come, then sit with husband at computer and play for a few hours till around 8pm, go watch TV and/or work or genealogy or play Dwarf Fortress till I feel like I can sleep. Not the most exciting pattern, then again if I take out the medical stuff it's CLOSE to what I'd had before this mess started. I dunno, how do you add something different to a healing/prepping for surgery (and next bout of hospitaliation)? I'm theoretically a month and a half away from it, and in a lot of ways I'm ready NOW.
Then again, the fairies don't seem to think so. Yesterday they actually told me that I'm ALMOST ready for it, and they specifically said, "mentally, physically, emotionally, and spiritually (someone added, 'atomically', but won't tell me whom.)" They also mentioned that next month I'll be at my strongest, so maybe that has something to do with it. Beltane factors in then, and I have been praying for the fertility of healing, so yeah I guess that makes sense.
Three of me (including myself), though, really want this to be over with. Gigantic Bag off (we'd like the foley gone too)! Preferably none of us want any bag at all, but that little colostomy I had last fall is looking pretty good right now. Personally I'd just like to be able to go back to complaining about mundane things like occasional arthritis/tendonitis, programming issues, and what to watch on TV tonight. Not that I can't (and not that I don't) do that now, because I'm at home, but I'd like a whole lot to have them be the WORST stuff I have to complain about.
...As opposed to, "I can't get up from bed till my husband gets home because falling's bad."
Current Mood: aggravated
April 6th, 2015
|08:20 pm - Dance as if no one is watching...|
And there it is; two days ago I got the message to start working, etc again. Basically: "Stop keeping your life on hold and wallowing in being sick." Full moon vision kind of bonked me on the head with that. I don't think I've ever gotten Full Power Brigit before. She's rather intimidating to see, honestly, though I believe that's the point! I mean, She appeared to me in the form of one of the angels from the Doctor Who episode that creeps everyone out (the one with the statues you can't blink near). Yeah, that certainly got my attention!
So yesterday, along those lines, I finally made the little Spring wreath I'd been meaning to make. And this eve I've started back working at "Nikria's Menace", after doing two laps around the apartment WITH ONLY MY CANE.
And I also found out I weigh 118 now. Nice; gaining weight good:)
Current Mood: determined
April 2nd, 2015
|06:57 pm - Plastic Surgery: it ain't just for nose and boob jobs|
Went to see a plastic surgeon at Lahey, and learned the above. I honestly hadn't known that before! What he's intending to do, working with Dr Ricciardi in surgery, is to somehow figure out how to hold the intestines in place while they're healing up. I got kind of nervous at the thought of something being implanted, because - well, you know my body and foreign bodies. So I told him about that, and he reassured me that isn't actually too uncommon an issue. What he'd do in that case, knowing that, would be to either graft something from a leg muscle or insert a kind of mesh that would dissolve within six weeks after surgery, so that my body wouldn't have time to do its thing about that. It's hard to believe that surgery is basically two months away!
We also saw Dr Blute on Monday. He too was able to clear some things up; for one, he himself had already moved the kidney down a bit. For another, utter removal of an organ like that was an extreme measure that would only be done under the worst of circumstances. But he also mentioned that once the field wasn't contaminated (i.e. when the intestines and fistula were contained), my body might very well go ahead and heal itself.
It's possible. My husband's always said I heal like Wolverine, which is kind of funny (and true) since my skin alone is so sensitive it'll break down at the drop of a hat - and then it might all be half-healed by the next day. So yeah, possible.
The fairies knocked me over today. While I was expecting there to be another thing to ponder and concentrate on, I was just told today it would be a hopeful day of good news. So, being a little confused by this, I asked, and was told rather bluntly that when I needed a test, I'd get one, but some days are just good or bad, and I should learn to accept that!